Anxiety of getting diagnosed & treated with NO SLEEP DOCTOR

[kaiasgram]

My anxiety is sky high, I wonder if anyone can help. I'm awaiting the arrival of my equipment (specified below, prescribed pressures 6 to 10). Thank goodness for this forum and all of the good people on it. When people refer in their discussions to "your sleep doctor" I cringe because with Kaiser, at least in my region, you have no sleep doctor! I'm told that a doctor reads the data from your take-home initial test and your take-home titration study, but I've never had access to that doc or any sleep or ENT doc, and even the RT I saw who demo'd the titration machine never responded to my requests for help during the titration week. I've had to do everything myself, including diagnosing myself, tellng my primary care doc that I needed a sleep study, figuring out how to get exhalation relief on my titration machine so I could try to produce a valid study, dealing with the bruise on my nose from the one-size-fits-all mask they send you home with, and on and on... (again thank goodness for this community).

As a result of the cookie-cutter assembly line approach of Kaiser, I don't have a lot of faith in the prescription that resulted. The low pressure of 6 may simply be because I hardly slept during that week due to anxiety and the discomfort of the machine, mask, pressure, etc. I doubt I had much if any real deep sleep. So I also don't trust the high pressure setting of 10, because doesn't the need for pressure generally increase as one sleeps more deeply? I may have had one night during that whole week when I hit some deep sleep. Now I'm worrying that I just spend a thousand dollars on a machine that could end up being not the right machine (e.g., do I actually need VPAP...).

I will request the report from the titration study and maybe that will help me, or I could take it to a private doc for consultation. In the meantime, if anyone has anything comforting to say to me at this point I would really appreciate it. Am I off track in my assumption that there's a correlation between depth of sleep and need for pressure?

I've been through a lot of "stuff" in my life but this whole experience is probably the worst because of the way I feel, the anxiety it's caused, and the disability (self-employed and unable to work for the past month with resulting financial distress). I'll take any kind of reassurance anyone has to offer! Thanks in advance!

[MaxDarkside]

I'll take any kind of reassurance anyone has to offer!

I'll give you some reassurance and encouragement! The situation they have put you in empowers you. You can be in control. That helps some types of anxiety. You have a good, data-capable machine. You will be able to see your data, your sleep, your events, etc. with freely available software and maybe with some guidance here, understand what you see so you can make changes to further improve your life... and that is goodness.

[sleepycarol]

You are in the right place for help.

I truly believe if it weren't for the forum, my cpap would have been thrown in the closet and forgotten about. But with the help of the generous forum members, I was able to work through any issues I had. They held my hand and encouraged me to do what I had to do to make it work. I didn't have nearly problems as some members -- and no matter what you are struggling with there is help, encouragement, high-fives when things go right, and a sense of family among members here.

If and when you need help, post and let others help and encourage you. When things work out, let them know so they can pat you on the back!! You will be glad you stuck around.

[kaiasgram]

maxdarkside and sleepycarol, thank you both very much for the encouragement. I already know I would not have gotten anywhere without the people on this forum. This is an amazing resource. It sounds like I chose a very good machine (I did choose it myself, my Kaiser plan doesn't cover cpap equipment so I had to buy my own), thanks for your endorsement of that model. Does my new S9 Autoset come with the data card or will I have to buy that separately? I haven't even begun to learn about the software (I have a Mac, might that limit my options?)

Well, I didn't think I needed any more EMPOWERMENT as I've had to cultivate a lot of that already in my life, however, this condition and everything that goes with it has pushed me into a search for even greater levels of personal empowerment and frankly, greater acceptance of things I actually don't have control over, like aging and vulnerability and loss/decline of the physical body, and I could go on but you know what I mean. Thank you again for taking the time to offer support. I look forward to being able down the road to offer some back.

[nanwilson]

maxdarkside and sleepycarol, thank you both very much for the encouragement. I already know I would not have gotten anywhere without the people on this forum. This is an amazing resource. It sounds like I chose a very good machine (I did choose it myself, my Kaiser plan doesn't cover cpap equipment so I had to buy my own), thanks for your endorsement of that model. Does my new S9 Autoset come with the data card or will I have to buy that separately? I haven't even begun to learn about the software (I have a Mac, might that limit my options?)

Well, I didn't think I needed any more EMPOWERMENT as I've had to cultivate a lot of that already in my life, however, this condition and everything that goes with it has pushed me into a search for even greater levels of personal empowerment and frankly, greater acceptance of things I actually don't have control over, like aging and vulnerability and loss/decline of the physical body, and I could go on but you know what I mean. Thank you again for taking the time to offer support. I look forward to being able down the road to offer some back.

Kaiasgram...
You WILL make it, you have the right attitude and with persistance you will soon be on the way to good sleep. If it wasn't for the wonderful friends I have made here, I would be in a pine box today. I had no idea what I was doing either. I read every word I could get my hands on and with help from friends here, I made it. You will too, you are determined to make a go of it and I applaude you for that. Soon you will be here helping others and "paying it forward" to all the newbies that arrive knowing nothing.
Keep asking questions when you need to, thats the only way you succeed.
Cheers
Nan
.

[kaiasgram]

Nan, you give me too much credit -- I'm not so brave, in fact I'm totally fear-based at the moment. It is only the image of the pine box (in other words, fear of expiring in the middle of the night and the feeling that I have no choice if I want to keep breathing at night and functioning during the day) that is keeping me going and fighting to get on top of this and to become friends with "the machine." But yes I am determined! Thank you again, I will be here for sure, trying to get and give help.

[BostonGal]

You should be proud of yourself and what you have accomplished so far. See any post from Pugsy about Sleepyhead (she has the links in her signature). It's really easy to use...and it's free. Also there is an SD card in the back of your machine that might just click into your computer if you have an SD slot (if not you can get an adaptor from staples/walmart). The data will help you know if your 6-10 prescription is good. Personally, under 6 is hard to breathe for me. If 10 isn't high enough, then you can always adjust it up. People here can help you do that too. You can buy replacement pillows on ebay to save a little money.

Good luck, you can do this.

[archangle]

I'm not so brave, in fact I'm totally fear-based at the moment.

Be afraid of apnea, not the machine. Remember, it is just air.

It's not even much pressure. If you stick a straw into a big glass of soda and blow bubbles, that's less pressure than the CPAP will generate.

[sylvie]

When people refer in their discussions to "your sleep doctor" I cringe because with Kaiser, at least in my region, you have no sleep doctor! I'm told that a doctor reads the data from your take-home initial test and your take-home titration study, but I've never had access to that doc or any sleep or ENT doc, and even the RT I saw who demo'd the titration machine never responded to my requests for help during the titration week. I've had to do everything myself, including diagnosing myself, tellng my primary care doc that I needed a sleep study, figuring out how to get exhalation relief on my titration machine so I could try to produce a valid study, dealing with the bruise on my nose from the one-size-fits-all mask they send you home with, and on and on...

I hear ya, sister! I, too, had to do everything myself, i.e., most especially, no sleep doc, diagnosing myself, and telling primary doc I needed a sleep study, and everything else you said! I don't have Kaiser, but I experienced basically exactly the same "treatment," as a result of being sent to a certain sleep center. It's been very hard for me too, and lonely, and awful. But I think I've basically "made it," by refusing to give up, even though a lot of days were extremely dark and horrible, and also "with a little help from my friends," from forums like this. If I can make it, you can make it. I know Exactly what you're going through.

[kaiasgram]

Thanks sylvie, I'm sure I'm not the only one to have this thing become as dark and lonely and awful as it has become for me, and I'm sure it's not just with Kaiser. I used to hear about sleep apnea all the time and it never sounded like such big deal -- mostly I'd hear about bed partners complaining about the noise of the cpap machine. I wish I didn't have to find out how truly disabling and traumatic it can really be. I'm glad to hear you feel more on top of it now, that does give me hope.

Archangle, I am definitely afraid of the apnea, very afraid! I live alone. I will never forget being told I have a severe case of a potentially life-threatening condition, and then being sent out the door with an appointment for over a month later -- guess how easy it was for me to go home and drift into sleep after that?!? Now, I'm not afraid of air, but I am afraid of what is required to get some in me at night! Bruising, belching, and even a bit of occasional choking on too much air -- at this stage for me, it's kind of a tossup between how I sleep with apnea and how I sleep with "the machine." I'm sure my attitude will improve with time and improved sleep, it's just where I'm at right now.

So, sincerely, thank you both and thank you to everyone who has responded to my distress. It does help me hang on to some hope.

[pats]

My anxiety is sky high, I wonder if anyone can help. I'm awaiting the arrival of my equipment (specified below, prescribed pressures 6 to 10). Thank goodness for this forum and all of the good people on it. When people refer in their discussions to "your sleep doctor" I cringe because with Kaiser, at least in my region, you have no sleep doctor! I'm told that a doctor reads the data from your take-home initial test and your take-home titration study, but I've never had access to that doc or any sleep or ENT doc, and even the RT I saw who demo'd the titration machine never responded to my requests for help during the titration week. I've had to do everything myself, including diagnosing myself, tellng my primary care doc that I needed a sleep study, figuring out how to get exhalation relief on my titration machine so I could try to produce a valid study, dealing with the bruise on my nose from the one-size-fits-all mask they send you home with, and on and on... (again thank goodness for this community).

I'm also a Kaiser patient. Mine - San Diego, Southern California - was definitely not a one-size-fits-all mask situation. Each patient was given a choice of three styles of mask. The RT selected the size for the patient, and did the fitting. After titration, I was mailed my APAP prescription. If you did not get answers to questions you asked during the titration study, you should contact member services to report it.

I also asked for a Provent prescription for use when traveling. That required a face-to-face consultation with my sleep doctor, who really did exist and seemed very competent. I had got the APAP a couple of weeks before the consultation, and took the data chip with me. He had the data downloaded, reviewed the printed reports, and discussed them with me.

Although I don't have DME benefits, I could have afforded to use a brick-and-mortar DME who would have charged several hundred dollars more than cpap.com, and done mask fitting etc. I calculated that I could buy quite a few masks to try out for the extra cost. As it happened, the second mask I tried worked for me. I also feel very comfortable monitoring my data myself.

[kaiasgram]

pats -- Wow, I should have moved to San Diego before getting sleep apnea! Your experience sounds light years better than what happens up here (Sacramento area). I even asked the RT, after starting into a panic attack when he put the nasal mask on me and fired up the machine, "Aren't there some different types of masks I could try?" to which he replied no, and "you'll get used to this." I could see online that he read the email I sent him during that titration week, but he never replied. I am considering calling Member Services about all this, but I wanted to get my Rx in hand first. When I told my primary about my experience with the sleep medicine dept and how awful it was, she said "It was even worse three months ago."

One silver lining about not having DME covered in my Kaiser plan is that before I even turned the titration machine back in I was online researching cpap.com prices and calling them for info about how to order equipment and accessories. When I brought the titration machine back to the hospital I included a downloaded cpap.com prescription form with fax number and a very nice note asking them to fax the Rx right away, which they did -- though this also required several calls from my primary in addition to my own efforts. At least I won't have to wait weeks for a prescription (the Kaiser info sheet you get at the beginning of titration says the process can take up to six weeks). My equipment is being Fed-exed and I should have it tomorrow.

Maybe I'll ask for a Provent prescription and see what happens! Thanks for your post.

[archangle]

Archangle, I am definitely afraid of the apnea, very afraid! I live alone. I will never forget being told I have a severe case of a potentially life-threatening condition, and then being sent out the door with an appointment for over a month later -- guess how easy it was for me to go home and drift into sleep after that?!? Now, I'm not afraid of air, but I am afraid of what is required to get some in me at night! Bruising, belching, and even a bit of occasional choking on too much air -- at this stage for me, it's kind of a tossup between how I sleep with apnea and how I sleep with "the machine." I'm sure my attitude will improve with time and improved sleep, it's just where I'm at right now.

Apnea will kill you, but you've probably had it for 5 or more years. If it hasn't killed you yet, you're probably not that likely to die in the next month while you're trying to get started with CPAP.

[MaxDarkside]

Does my new S9 Autoset come with the data card or will I have to buy that separately?

I received mine in a carrying bag already set up by the DME, but I would presume there is a data card either in the box or maybe in the machine. The slot is in the back, straight back from where it says "AutoSet" on the top. I'm guessing there will be a small pkg in the box with a new card in it. If not, you can pick one up at places like Best Buy, Walmart, Target, ... Mine is a ResMed card and looks to be 1 GB and is using only 30 MB.

Well, I didn't think I needed any more EMPOWERMENT as I've had to cultivate a lot of that already in my life, however, this condition and everything that goes with it has pushed me into a search for even greater levels of personal empowerment and frankly, greater acceptance of things I actually don't have control over, like ...

I like to put my challenges into little mental boxes in my mind and when the time is right for me, I pull one out and deal with it and if not finished, I put it back into its little mental box and tuck it away for later. That way they can't all team up on me and are dealt with on my terms. I prioritize them based on Importance and Urgency. I tackle the Important and Urgent ones first, then I'm left with the Important and not urgent. Nice! You can work on your own pace for sure on those. If they are not important (or I don't have any control over them) forget about em, and purge any notion of dealing with issues that are neither important nor urgent !

Anyway, I've strayed off topic

[MaxDarkside]

Archangle, I am definitely afraid of the apnea, very afraid! I live alone. I will never forget being told I have a severe case of a potentially life-threatening condition...

Like Archangle says, you've been with this condition for some time. You are on the right path and aggressively taking the right steps. The way I look at it, some folks are on servo-ventilators, they have trouble even breathing on their own during sleep, so I figure compared to me they have "big-dog" problems. Me, I had an AHI in the 40-50 range, I can breath on my own, so I have "puppy" problems compared to them. Yes, it's good that you are not dawdling... I had significant issues after probably 30 years with OSA and I had finally come to the end of my rope, literally, but once I got my ResMed S9 AutoSet, and then a few other sleep monitor do-hickeys thinga-ma-jobs, my life turned around. Now I sleep better than a 30 year old, sometimes better than a 20 year old (I'm 55).